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Monday, June 27, 2011

Scarlett was doing so well that we were discharged early yesterday. She does not have to be back in the hospital for almost 4 weeks! I'm crossing my fingers that we make it that long...it would be the longest out since her December diagnosis.

The strangest, yet best thing so far: she has not thrown up ONCE from this chemo. I'm not sure why, or if it will last. It doesn't really matter. It is such a relief. We are still handling her very carefully and giving her all the anti-nausea medications (which don't usually work all that well). The idea that we could be turning the corner away from sickness is almost too much to handle.

It is another busy week. Today we visit the Ear, Nose and Throat doctor to have her ears checked before hearing aids are fitted in July. This is apparently a formality, as I can't imagine that after all the doctors, NPs, nurses and specialists she has seen, plus MRIs and CTs, that we would find something abnormal about the anatomy of her ears. I'm always ready for surprises, though.

Tomorrow and Thursday we go for labs, and I will bet she will need platelets. One of the chemo drugs is really hard on her platelets, and with the drama that ensued last month, I will be watching those numbers very closely so we don't end up in an emergency situation again.

We're hoping we can fit some fun things in, too. We got free tickets to the county fair, which we haven't been to in years. As long as it doesn't get too hot!

Saturday, June 25, 2011

Chemo is going well. No sickness yet, but the yuckiest is yet to come. She is irritable and hasn't napped all day.

Our neighbor was discharged. Just in time, I think, for everyone's sanity. The nurses are trying to keep the other side of the room empty tonight, as they don't really have the staffing for today. I'm not going to hold my breath, though.

Scarlett's new cousin will officially be a boy!

Best wishes to everyone participating in Relay For Life this weekend in Fremont (and anywhere else!) We are sad we can't be there, but we so appreciate the work that everyone does to support research and families. There are still events throughout the summer all over for those who want to participate! We're still hoping to attend the Newark event in July.

Friday, June 24, 2011

It is becoming painfully obvious how overcrowded our hospital is. They were just approved for expansion and will begin construction soon, but (hopefully) we won't be around to see that. Nearly every time, there are not enough beds for the kids who need them. Even when they use beds on other floors and in nearby hospitals, we still get pushed back for admission because it is just too crowded. It took nearly three hours to get through our clinic visit on Wednesday, and we were not the cause of any of the delays. Our doctors seem to be running from patient to patient, and while I always feel they are listening and that they really know Scarlett well, I feel bad taking up any extra time that I know they would be with another patient. It is frustrating, but we are committed to the doctors here, as so many others are, so we try to stay calm and be understanding that it is not anyone's fault that so many kids in this area are battling such difficult diseases.

Scarlett's admission got pushed overnight. We waited all day yesterday to hear that they were ready for her, and then heard at 5 pm that we were not going to get a bed. It was nice to have an extra night at home, but it just delays the inevitable. We got the call this morning that they were ready, so Scarlett and I got settled and chemo began this afternoon. So far, no reactions or side effects, though they always seem to hit in the middle of the night.

We are, of course, in the one and only shared room once again. Our neighbor is a very well-meaning 9 year old boy. He is waiting for his levels to clear, something we are more than familiar with. He has tried to be very patient and understanding when Scarlett cries (which has been a LOT!), and apologizes through the curtain when he gets a little noisy. I feel bad for him and his dad, as Scarlett has recently become very difficult to get to sleep. As hard as it is at home, it is even worse in the hospital, where the sights and sounds are distracting. Just as I think she has settled down, she revs up again. Hopefully its just one of those phases everyone talks about.

Tomorrow she gets another dose, and then we should be released on Sunday afternoon. Thanks everyone for the well wishes and positive energy sent her way!

Thursday, June 23, 2011

As we move into the Consolidation phase, there is a lot of new information to read through, new drugs to worry about, new side effects to manage and a new schedule. Last week, we reviewed and signed the consent form for the remainder of Scarlett's chemotherapy treatment. It is a 25-page document that outlines all the schedules, medications, side effects, risks and rights for the next 8 months. The last time we signed a consent like this, it was before chemo began, and we were so overwhelmed with information, it seemed like an encyclopedia volume of scary stuff. This time, we know what to look for and what to ignore.

First, the schedule for the next 8 months. Each cycle is still 28 days. The dates are loose, since everything depends on her counts, which are recovering more slowly each round.

Rounds 5 and 6 (June and July)

Day 1: Cyclophosphomide and Etoposide (IV, each over 1 hour)

Also given Mesna, a medication that protects the bladder from the effects of chemo.

Day 2: Carboplatin and Etoposide (IV, each over 1 hour)

Days 3-28: NO CHEMO! She gets to rest, recover and relax. She will still visit the clinic each week for blood draws and urine tests, need multiple blood and platelet transfusions, as well as get daily injections to help bring her immune system back.

Rounds 7, 9, 11 (August, October, December)

Days 1-21: Cyclophosphomide (Oral)

Days 1-10: Topotecan (Oral)

Days 22-28: Rest.

Rounds 8, 10, 12 (September, November, January)

Days1-28: Erlotinib (Oral)

Theoretically, we will not have to be inpatient at the hospital after July. The oral drugs will be given at home, mixed with syrups or applesauce (pending we can get her to eat by then - otherwise, we will have to keep the NG tube).

MRIs will continue every 2 months, as well as hearing tests to monitor the effects of the chemo (though she is no longer getting ototoxic drugs, the study is monitoring the longer term effects).

Some of the drugs she will be getting are the same from the last 4 months, but there are some new additions, with side effects all their own. The study breaks the side effects into 3 categories: Likely, Less Likely and Rare but Serious. I try to focus on the Likely column, but that Rare but Serious column always catches my attention. Each drug has nearly a full page of possible side effects listed. Just some:

Erlotinib (new): This is a new drug in the cancer treatment world. The notes I have say it has been given to around 4,000 patients...not that many. I am pretty sure this is the "experimental" part of this research study, to see if this particular drug has a better outcome for babies with brain tumors. It is not exactly a chemo, but rather a drug that supports the chemo, I think. Because it is new, long term effects are not known.

Likely: Skin rash, diarrhea, nausea, vomiting, fatigue, bone pain.

Other possibilities: Dry skin, headache, eye infections.

Other notable parts of the consent form include:

This protocol continues to monitor for 5 years after treatment, with MRIs, physicals, blood work, etc.

Our doctor would remove her from this study if a better treatment was discovered.

"We cannot and do not guarantee or promise that you will receive any benefits from this study." While this generally pertains to financial benefits, I can't help but see this as ominous.

Other choices in treatment, including choosing no treatment, in which case, the disease will get worse.

The study pays for the services, supplies, procedures and care associated with the study, but we are still responsible for routine care. I am not sure how this breaks down with our insurance. We'll never really know how much her full treatment costs, though, the sidebar total is getting pretty "impressive" (as the doctors like to call big things).

Seeing it all on paper is much more frightening than the day-to-day experience. She's doing well, and it seems to be working, so I don't care what they say could happen. We have put all our eggs in this basket, so to speak. We have to believe it will work.

Today we find out if Cousin Orange-o is a Pink-o or Blue-o! :-) Lindi and Mike are going in for their 20 week ultrasound later today.

Also, please keep the Nhu family in your thoughts. Their 6 year old daughter was recently diagnosed with a brain tumor, which will be removed in surgery tomorrow by one of Scarlett's neurosurgeons. They found our blog and we met yesterday to answer any questions we could. They don't know yet what kind of tumor they are dealing with, so we can all hope that it is benign.

Tuesday, June 21, 2011

Just as we were lamenting the lack of seasonal weather, we got hit with a heat wave. It was too hot to stay in our house with no breeze, and it was much too hot to be outside, so I did the only thing I could think of: we went to the mall. We met a friend (who also has a too-warm baby), window shopped till we dropped, then went back for more today.

I realized I am not sure what to do with Scarlett in the heat. Since she was born in October, we have had very little sun. It takes some adjusting to my usual packing list of a jacket, blanket and extra socks. I was so excited to finally dress her in her summer outfits that we have had since before she was born! I thought she would grow out of them long before it got warm, but if there's one positive side to her slower growth, it's that we get a lot longer wear from her clothes. Plus, holding a 15 pound heater against your already-sweaty skin is downright torture. So, with her sun hat, glasses, 100 SPF sunscreen, stroller shade and a frosty drink for me, we are trying to enjoy the sunshine...on the walk from the parking lot to the door of the hospital and mall. Hopefully we'll venture further soon.

Part of my delay in writing lately (besides the 80 degree room with the computer) was that we were at a hospital each day last week. Labs on Monday and Friday; blood and platelets on Tuesday; MRI on Wednesday; Neurosurgeon on Thursday. It was somewhat grueling, driving in and out each day, having her port accessed, waiting in the clinic, and taking in a lot of new information.

Now that communication has begun to flow between the Neuro-Oncology team at Lucile Packard and the Neurosurgery team in Oakland, the details of Scarlett's future cranioplasty (cranial reconstruction) surgery are under way. While the neurosurgeon originally felt that sooner was better, oncology pointed out that the chemo will cause her bones, skin and other tissue to heal much more slowly. She is also at risk for infection, which could compromise any procedures and would necessitate repeat surgery. So, the surgery will not be done until she is finished with all the chemo, somewhere around 18 month old, next Spring.

It's hard to fully capture the startling shape of Scarlett's head in a picture. The bones shift throughout the day as gravity pulls more fluid through her shunt and out of her brain.

We learned that this procedure, while "cosmetic" (in that it will improve her appearance) it is not optional, and will be covered by insurance...whew. Depending on what needs to happen, it could involve synthetic or even cadaver bone implants to help fill in and secure the cranial bones. It is not nearly as invasive as her tumor resections (the dura layer around her brain would not be crossed), it will require several surgeries over a few weeks. And, of course, a new shunt.

This was a huge pill to swallow, and we are struggling some with the idea of more surgery. It is so hard on her, and will be even more difficult when she is older. It is also difficult to look at such major procedures after our insurance changes; we had naively thought we were nearing the end of hospitalizations just in time, before co-pays and our payment responsibility may dramatically increase. It may affect my ability to work next year, or at least require a very flexible, forgiving position for one or both of us.

But, as both sets of doctors confirm, we wouldn't want to leave it crooked if we could fix it. The time to fix it is while she is young enough to forget it ever happened, and when we are most likely to have the best outcome. She'll thank us when she's older and has a nice, round head.

Thursday, June 16, 2011

Scarlett is 8 months old today! She is about 15 pounds, 4 oz. and 25 inches long. She likes to watch Signing Time and Sesame Street while momma does the dishes. She kicks anything that comes near her feet, and beginning to push back when we put any pressure on her feet. She has one full tooth, and two others on their way through. She still doesn't eat much in the way of solids (or formula, for that matter) but she is improving a little every day. She gives the biggest, drooliest smiles and is generally happy most of the time. Everyone has noticed how much more interactive she is lately, which I think comes from being home so much more than she has been in 6 months.

Rocking her new glasses and hat.

It has been 6 months since her brain tumor was discovered in December; 5 months since the tumor was officially removed. She has had 8 surgeries, and about 90 days in the hospital. We have come so far, yet have a long way to go.

Her MRI has officially been given the "all clear" by both neuro-oncology and neurosurgery! No tumor!

Her right brain hemisphere has decompressed well and looks relatively normal now. Her current shunt (her second) is over-draining, which is causing the bones of her skull to collapse inward. While this does not bother her too much, her neurosurgeon has decided that it will need some attention - a few surgeries (including a third shunt) over two weeks later this summer. The two teams will have to negotiate to find a good time - between chemo cycles but before she is one year old (bones heal better before one year). While more surgery does not sound fun, we want to make sure we do everything we can now to ensure her life is as normal as possible when she is older.

She begins the next round of chemo next week, so this weekend is our chance for a little fun - hopefully we can make it a nice Father's Day for Chris!

Sunday, June 12, 2011

This video is supposedly only going to be available for a short time, but I wanted to share with as many as I could. I can't speak to the validity of any of the arguments (though I did read more articles), but the filmmakers make a good case for the FDA trying to prevent this doctor from profiting or even offering his non-toxic, non-invasive cancer therapy.

This does not really affect our decisions at this point, but it is something to think about.

The weather did not cooperate, so we could not go to the beach. We have had the most un-California weather this June...cold, cloudy, windy. And unlike the postcards, our beaches are not really warm; if it's cold at our house near the Bay, it is colder, foggier and windier at the coast (about and hour from us.) So in order for Scarlett to be comfortable, we will wait until there is some sun.

We debated on how to spend the weekend, but ultimately decided to do some deep Spring Cleaning. Our house gets to be a disaster in a very short time lately, with medicine syringes, baby bottles, diaper pails, laundry and baby gear everywhere. I feel like we have way too much, but then, when I need something, I am very glad I have it! We set aside some books and DVDs to donate to the hospital library, sorted through all the bills, and finally tackled our "laundry mountain" that was getting out of control. As much fun as the beach would have been, we were happy to take time to sort and clean out things that have been ignored for months.

The saddest thing was packing up Scarlett's bassinet, which she slept in for the last 8 months. She is officially a crib sleeper. I am sad that I might never see it again, that it will never hold our tiny baby again, and there may never be another. I'm not too sentimental about most things, but as nice as it is to see her grow and mature, it is a little heartbreaking, too.

It is not sad to get that corner of our room back, though!

We have more cleaning to do today, but first we are headed to the Farmer's Market. Have a great day!

Friday, June 10, 2011

Yesterday, we went in for what was supposed to be a routine blood-draw and simple out-patient chemo injection. I should have learned by now...

Things were moving slowly in the clinic, so Scarlett and I had time for a bottle, a few diaper changes, and some play before the nurse was ready to access her port and draw her bi-weekly labs. As soon as Scarlett had tired out and fell asleep, in came the nurse, ready to poke. Luckily, Scarlett is a champion port accesser, and hardly notices that we have to hold her down and poke a 3/4 inch needle into her chest (thanks to the numbing cream we always use first!). We finished quickly, and packed up as the nurse called in a prescription refill for us. Before we left, I asked (I asked!) if we needed to wait for the results before we left; she said no, we were clear to leave. Our regular nurse practitioner was on vacation, so we left some of our big questions for next week.

The pharmacy needed a little while to prepare our prescription, so we grabbed a drink and a snack in the cafeteria. We came back to the pharmacy just in time for the clinic nurse to come running in, saying, "Oh, thank goodness we found you!" Apparently, Scarlett's platelet count was below 10,000 (normal would be above 100,000) so they wanted to transfuse immediately. This was somewhat alarming, but not unexpected - that's the whole point of chemo, and we knew her counts were low; she had been easily bruising and had a few bloody noses, but we were just waiting for the call that it was time. As I went to re-apply the numbing cream to her port, I realized that the first puncture had not stopped bleeding; the band-aid on her chest was soaked through, and her shirt (white, of course!) was spotted with blood. Her port is directly under the car seat strap, so I hadn't noticed. I'm glad they stopped us, or we would have gotten all the way home and had to come back.

Platelets are cells that help the blood clot. When we are injured, platelets cause our blood to get sticky and coat the injury so that we don't lose too much blood. When platelet counts are low, blood does not clot, and bleeding can be difficult to stop. Scarlett had low hemoglobin (red cells) too, so losing much of anything was not good. They accessed her again and started a platelet transfusion, where platelets spun out of donated blood are given just like blood (interestingly, they don't have to match the blood type like blood, and are thick, sticky and yellow.)

When the platelets were done, she looked good, so we de-accessed her port again and held a piece of gauze on the puncture. And we held it. And we held it. For 20 minutes. Now she had two oozy punctures that would not stop bleeding, one from each needle access. Just as they were discussing putting ice on it, which I was arguing would make her so upset she she would bleed more, things got really exciting: she developed two hives, one on each temple. She has had allergic reactions to blood products in the past, but not to platelets. This caused the nurses to jump into hyper-drive, pulling in doctors and equipment to access her port for a THIRD time. They were in a hurry to get antihistamines and Benadryl into her system in case her breathing became affected, so they couldn't wait the 30 minutes for the numbing cream to take effect and had to poke without it. That was my cue to go out of the room and cry; I can't take it when they have to hurt her. I went back in when I could hear that things had calmed down, and they assured me she had taken it like a champ and had already relaxed.

The gave the reaction medications, and the hives went away, but the bleeding persisted. For some reason, it seemed that the platelets were taking longer than they should to be incorporated and stop the bleeding. So, since it was already 6pm and the clinic was near closing, they made the decision to admit her over night for observation. We were moved over to the short stay unit, which is for just that - short stays less than 24 hours for minor issues. It took almost two hours for the paperwork to go through, for a bed to be found and for everyone to be prepped on Scarlett's case...by which point, the bleeding had long since stopped.

I spent the night in a freezing room with too many windows, all of which face the fully-lit and always bustling main entrance of the hospital, sleeping in a reclined hospital chair. Thankfully, my mom had been nearby and brought me some clothes (because of course I picked yesterday to wear a skirt!) Scarlett got her blood transfusion, all her labs came back regular, and she was cleared to go home at 11am.

Thank goodness it is Friday. No hospital this weekend. We are going to the beach!

Wednesday, June 8, 2011

Yesterday Scarlett had her second auditory brainstem response (ABR) test. This test measures the brain's response to sounds using electrodes on the scalp. Small earphones are used to produce sounds at different levels, which gives audiologists an accurate idea of what is being heard. This test allows hearing deficits to be diagnosed accurately long before children can describe their own hearing. It is done under general anesthesia and takes about 2 hours.

The hospital tries to schedule babies for anesthesia early in the day, since they have to be NPO (no food by mouth) for several hours before. You just can't make a baby understand why you won't give them a bottle when they are hungry! This worked out well for us this time, though it meant being up and on the road before the sun was up.

The test went well. She is officially considered to have moderate to severe hearing loss in both ears, though the left is slightly worse than the right. The most affected is the higher pitches, which are critical for speech development. There has been a very slight improvement since last time, most likely due to the infection she had then. So, not much change, and we move forward with hearing aids and speech therapy. Something that I don't think many people understand is that she CAN hear - she hears our voices when we are close, she hears the dog, the television, her musical toys, the door closing. We really questioned her hearing for a long time, because she would only rarely react to these sounds, but as she has developed, she is much more interactive and shows us that she hears us.

The doctor who did the test was going to give the results to Scarlett's audiologist so that we can fast-track hearing aids while we still have good insurance coverage. I appreciate that they are so understanding about this and trying to help us wherever they can.

Tomorrow we go in for her last dose of Vincristine (just out-patient chemo) and might have to sneak a little blood transfusion in, too. Another long, long day at the hospital!

Monday, June 6, 2011

It seems this round is not as bad for the little girl. She is feeling really great during the day, full of smiles, alert and happy. We had a great time at Tevis and Tabitha's first birthday party, where Scarlett was wide awake and watched all the other "big kids" play on the floor. We got to stay for the whole party, and got my classroom packed up the next day. Today she loved going to the grocery store and seeing all the people. She is still feeling a little queasy at times, but all in all, this has been easier than in the past.

Last night, she made a big move - into her own room. We have had her room and crib ready, but she had only spent a few short naps there. Last night, we thought we would just try it out, and it was not nearly as scary as I thought! :-) We have had her in our room in a Pack n' Play since she has consistently been sick at night, and we never wanted her to choke. This meant jumping out of bed multiple times per night when she would begin to cough or gag. It was exhausting. However, after three nights of no vomit, I thought we could try having her in the next room (with a video monitor focused right on her face!) Of course, things did not go as planned and she threw up in the night, but I heard her and was there just as quickly. She likes the light-up aquarium toy in her crib and slept just fine. We'll keep the play pen set up in our room just in case, but we might just be moving toward more rest for all of us!

Tomorrow we have to go in EARLY for her next hearing evaluation, which requires anesthesia and a few hours of tests, so it will be a very long day. This test will give us a better picture of her hearing loss now that the infection and antibiotics have cleared. We anticipate a slight increase, but not much. The results of this test will be used to guide us in choosing hearing aids in a few weeks as well. We have been making contact with the hearing intervention programs and the Early Start program, but everything takes weeks to respond and initiate. In the meantime, I am ramping up her exposure to sign language at home with Signing Time, as well as me modeling as much as I can. I'm putting my teaching experience to work!

Saturday, June 4, 2011

Scarlett's Induction chemo is over! It was very hard (and we still have a week or so of sickness) but we all survived the first four cycles of high-intensity chemo! In a few weeks we begin the Consolidation phase.

We're home and so far, it's not too bad. Scarlett is watching Sesame Street with Daddy. We are going to try our best to make it to a birthday party for our good friends' twins who are turning one. Tomorrow we have to unload my classroom and pack all the gear - cubbies, books, toys, bins and boxes - into our garage for whenever I have a classroom again.

Thursday, June 2, 2011

I have been given a wonderful gift - one night of uninterrupted sleep! This has not happened since January, when Chris and I took shifts in the tiny rooms at the other hospital after surgery. This time, he is taking on his first daddy-only chemo night. Since we got unlucky in the double room where only one parent may sleep over, I got to come home. No baby, no dog, not even sharing the bed! I'm going to try to relax and get a good night's rest so that I am refreshed and ready to handle the impending stress of post-chemo baby.

Before I go, just want to send out another thank you to those who have sent letters and gifts to us, and to Matt and little Ethan, who brought us dinner a few nights back. Scarlett hasn't been feeling very photo-friendly lately, but I did manage to get a shot of her dressed in her funky tights and on a lovely quilt (each of the squares are cross-stitch blocks made by people around the country).

"Mom, really? Are we done here?"

There are still many items I would like to get photos of her modeling - hopefully soon! We are so grateful for all your support.